Actress Selma Blair And Her MS Diagnosis

If there’s one thing I enjoy doing, is watching early morning TV while sipping on coffee. The older children have gone off to school and my littlest babies are still in bed asleep. This morning was the same, only today, an interview with actress Selma Blair with host Robin Roberts resonated with me.

Try Amazon Prime 30-Day Free Trial

In this interview actress Selma Blair shares her journey of living with MS – Multiple Scoliosis, a disease in which the immune system eats away the protective covering of the nerves. It can affect the brain, spinal cord and the optic nerves in your eyes. Aside from causing problems with vision, it affects your balance and muscle control, just to name a few. She has the most aggressive form of MS, and it has now affected her speech, as you’ll notice in her interview – spasmodic dysphonia, as well has her walking, which she now relies on a cane for assistance.

Wal-Mart.com USA, LLC

Once again I saw yet another disease trying to strip away the life of a woman and first and foremost a mother. I can relate to her, as I myself am living with Chiari Malformation. It makes you forget all that you knew, the life you knew and emerges you in a new life that is so foreign it may as well bring you to your knees. At times not even knowing what hurts more, as it becomes nearly impossible to vocalize what is wrong and what one is psychically feeling.

In this interview actress Selma Blair mentions …

an experience while having to take her son to school about a mile away, when returning home, having to pull over mid way to take a nap. I can’t take my kids to school, physically my driving is limited, and when I do, it must be close to home. And I understand the need, that dire need to nap. It’s an overwhelming feeling, it takes over your body and mind, and you absolutely have to lie down – ASAP, and sleep.

shame, shame that comes with having chronic pain and a disease that inevitably prevents you from being the mother you desire to be. And all you can do is what you can, to the best of your ability.

telling her son. She mentions that it wasn’t at all difficult sharing her diagnosis with her son. And I agree! Telling the children is so important. In my case, we’ve been open with the children, from why mommy needs quiet, why mommy needs to sleep, to why mommy needs to visit the doctor and why mommy needs to do an MRI. It is paramount to keep the children in the loop!

‘what gets you through those difficult days?’ … she gets in bed and doesn’t move. You just can’t do it all and it’s fine to feel crappy. Her son gets it and she has learned not to feel guilty. This is such an important message. A message to all those parents, that feel the need to play a role they can no longer play, the one where they can do it all, without the need of a break. When you’ve been diagnosed with something like MS or Chiari Malformation, you will have those days where you can’t move, where you get stopped in your tracks and can no longer move. Don’t do more than what your body can handle, put the guilt aside and live your truth. As she said, ‘it’s fine to feel crappy.’

If you haven’t seen the interview, I encourage you to do so, spreading awareness is essential as it motivates others to come out of the shadows and not feel ashamed or alone. When you voice your experience, you not only give a face to the illness, but you help others that are going through the same.

A-

Have you visited my YouTube channel, please do so, and subscribe!
Shop the latest denim from Topshop at NORDSTROM.

Advertisements

Reblog Wednesday: Chores — Real Life of an MSW

If there’s one thing I dread dislike doing, is washing the dishes. It’s one of those things that is never quite finished – like laundry. So, when I read this post from Real Life of an MSW I knew I just had to share.

Try Amazon Prime 30-Day Free Trial

Also, because I’d like to think Earl and I aren’t the only one’s desperately searching for the last clean dish to use when in need.

A-

Comical Explanation

via Chores — Real Life of an MSW

Visit my YouTube for easy nail tutorials

Shop Hot New Handbags at NORDSTROM.

Chiari Sister, I See You

Chiari Sister, I See You

As a stay at home mom, I frequently think about other moms that are in my position. It’s no secret that the stay at home parent doesn’t get enough credit. The day to day seems lost in translation to many, except the one living it. And often we need the reassurance, because as mothers – humans, we want to be seen and loved.

 Try Amazon Prime 30-Day Free Trial

Whether you have Chiari Malformation + Syringomyelia or any other illness that physically impairs you from feeling your best, know that you are doing your very best. I often compare myself to the wrong people, to those that don’t have physical pain and not needing to be medicated for pain relief.

adam-jang-260876-unsplash.jpg

As for the stay at home parent living with chronic pain though, the day to day is different and is a tiny bit more challenging. And for me, the physical pain can cause me to have self-doubt, so today, to my chronic pain brothers and sisters, I want you to know, I hear you and see you.

I want to reassure you that you are enough.

Just in case you haven’t heard it today, you did good!

You did more cleaning than your body could handle. It’s OK, not to do more, your body will thank you later.

Yes, it’s OK, the rest can wait.

You folded the laundry that had been sitting in the basket for over a week – no judgment, you did it!

You cooked a meal with love, and that’s all your family could ask for.

You’re pushing through the pain with every step you take – you’re a warrior!

Don’t be hard on yourself, you’re 1 in 1,000 uniquely designed people and not everyone will understand – and that’s OK!

Push through, shower; push through, brush your hair; push through, push through, push through.

Take a break, a much needed break.

Know that your illness doesn’t define you – you are beautiful, believe it.

You are so loved, and you are just as beautiful on the inside as you are on the outside.

You are not alone.

Chiari sister – I see you.

A-

Shop Coats for Now and Later at NORDSTROM.

Reblog Wednesday: Lies I Tell Myself: IV — chiariconversations

This weeks ‘Reblog Wednesday’ has come at the perfect time, and it’s by none other than Michelle over at Chiari Conversations. She’s a fellow Chiarian and her vulnerability and honesty is like breathing fresh air each time I read her posts. If you have neurological issues, or are a fellow Chiarian yourself, please follow her journey along!

Try Amazon Prime 30-Day Free Trial

And I say it comes at the perfect time because I have not been quite myself, the body pains have increased, my left leg and foot have been getting increasingly numb and the vertigo, well, the vertigo is a pain in the rear end! I’m going on 6 years since my brain surgery for my Chiari Malformation and every day feels much like I’m going through a slow death – only I’m still here and my brain is being squished by the minute. The stabbing pain behind my neck doesn’t subside and what seems to be the never ending hospital / doctor visits can make me feel much like an elderly than a young mom.  As Michelle clearly states, a few years ago I really don’t know how I could have handled these constant headaches. It’s not your casual headache, ‘you missed a meal, you are a little stressed’ kind of head ache – no my dearest friend and reader, this is a, run and close the blinds, turn off the lights, turn off the volume to everything, including the neighbors barking dog and let’s hibernate for say, a few weeks – kind of headache! The one where you momentary just wish to be a vampire, because lets face it, I wish the world around me was pitch dark, complete darkness.

If you have Chiari Malformation or not, maybe you are dealing other health issues and can relate …

The feelings of wanting to feel like wanting to enjoy life / social gathering without having the next day or even weeks be filled with even more pain and misery. Yes!

The feeling of not wanting to be told ‘you’re strong’ but know that I’d rather lay in bed in a fetal position because I can’t take the pain. Yes! 

The wanting to go to the store and not have to worry about my left leg – body, being overstimulated and being at risk of falling in public. Yes! 

The wanting to go out to a public place, say, church, etc. and just setting it on mute because the chatter and noise level is too loud for my brain to handle. Yes!

The need to want to be ‘able’ and not ‘unable.’ Yes! 

The feeling of constantly needing help, because lets face it, I can’t do it all – literally. Yes!

The need to want to tell scream people to ‘get.to.the.point’ because conversations overstimulate my brain. Yes! 

The wanting to stop being told, ‘but you look good’ because I know that if I looked like how I felt, I’d scare even my own offspring. Yes! and Yes!

What are some of your new normal’s?

A-

It can be difficult to really KNOW whether the pain is normal or not when dealing with neurological issues. It doesn’t help that pain is personal even in the temporal sense. Five years ago, I WOULD NOT have been able to handle this level of constant headache. I would have thought I was dying. Today, […]

via Lies I Tell Myself: IV — chiariconversations

New shoes for the new year at NORDSTROM.

Check out my latest YouTube video and subscribe!

Reblog Wednesday: My story — God’s Whispers of Truth

In my short blogging journey I can say, that I’ve come across some great people here on WordPress – phenomenal! These individuals are going through their own struggles yet still find a way to find strength and continue to find the light through the chaos that life can sometimes be. This is where today’s share comes in, I want you to meet Vivian, a fellow blogger, a sweet mama of four, wife and warrior fighting TBI – traumatic brain injury. I share her story in hopes that it allows you to know that what you’re going through today, you will get through because of Him.

Cast all your anxiety on him because he cares for you. 1 Peter 5:7

When I was diagnosed with Chiari , I can’t tell you I didn’t feel alone, I can’t tell you I didn’t feel scared and I can’t tell you I felt hopeless. But with time, things became clear and I became aware that through my diagnosis God has been helping me, helping me with patience and helping me accept myself, as I am – illness and all. He’s ahead of it all, ahead of any diagnosis and ahead of the plans He has for me.

A-

Welcome, my name is Vivian and I’m a TBI warrior, homeschooling mom of four and wife to a great and hard-working man. As a Christian walking through the valley of brain injury and recovery, I can not stress enough how much the power of God’s strength has held me up and given me courage and […]

via My story — God’s Whispers of Truth

New UGG Styles to Give & Get at NORDSTROM.

Do you love pastel colors, take a look at my latest YouTube video for more of this nail tutorial.

Reblog Wednesday: 4 Words Daily: Day 87 — wordsnomad

This weeks ‘Reblog Wednesday’ is from the very talented Ritwik. His writing is nothing short of inspiring and motivational, and his blog is full of his incredible work. Please pay him a visit!

 Try Amazon Prime 30-Day Free Trial

This quote here by Helen Keller reminds me to be grateful and be present – in the moment. Often times I’m looking at you but I’m not listening to you. There’s so much distraction and chaos that surrounds me that my mind is running far too quickly to stop and as the saying goes, ‘to smell the roses.’ There have been events in my life that could have broken me and taken me to the point of no return, like a separation, a breakup, my son’s autism diagnosis or my own Chiari + Syringomyelia diagnosis. But in the midst of this unknown I’ve seen the beauty that lies within these events. The fact that my son is such a wonderful boy, so beautiful, so sweet or the fact that after my diagnosis, I’m finally learning to slow down. It’s through life’s unprecedented events that I’ve seen my own strength. I’ve also seen the beauty that comes after the storm has passed, like when my two youngest babies were discharged from NICU – Neonatal Intensive Care Unit. What a joyous day that was, to have seen them going in so tiny and fragile, and then come out victorious.

The world has too many things to offer that will never fill a void in the heart. There have been too many times when I’ve attempted to do that, given in to the worlds offerings, only to be disappointed. When I’ve finally led with my heart, my heart is full – satisfied and content. As I read the quote below by Helen Keller, I could only remember something I’d heard a while ago ….

The best things is life, aren’t things.

Indeed!

A-

My latest YouTube nail tutorial video.

“The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart.” Helen Keller The words for today are:

via 4 Words Daily: Day 87 — wordsnomad

Wal-Mart.com USA, LLC

National Chiari Awareness Month – 2018

National Chiari Awareness Month – 2018

The month of September is Chiari Awareness Month. In May of 2013 I was diagnosed with Chiari 1 Malformation and Syringomyelia and my life since then has changed – tremendously. I remember going recently to a store, because it’s a place I visit regularly – they’re a sweet Vietnamese family, I’ve got the chance to get to know them. We were discussing Chiari the last time I went there, one of the daughters said, ‘besides going to the hospital when I was born, I’ve never been there.’ I was speechless, I know my way around – just about, every hospital in my area, I even know what hospital not to go to because they lack ‘my’ department – neurology. The difference between someone with Chiari Malformation, Syringomyelia, among many other different illnesses, is that we know too well what is like to be at a hospital – while others don’t. It’s an unfortunate truth.

Image result for chiari awareness month

There are currently four types of Chiari Malformation and each are classified by the severity of the disorder and the parts of the brain that descend into the spinal canal. As you can see, I have type 1, this is when the lower part of the cerebellum called the cerebellar tonsils extends into the foramen magnum. This is where only the spinal cord would otherwise pass through. Chiari unfortunately goes un-diagnosed, and is first noticed during adolescence or adulthood, usually by accident during an examination of another condition. As it happened to me, I went into the ER in May of 2013 for what was suppose to be a quick ‘trip to the ER,’ but turned out to be far more serious than your typical ‘headache.’

Shop NORDSTROM for sandals you need right now ☀️ FREE shipping, pick up in store and more.

What surgeries have I had for Chiari 1 Malformation and Syringomyelia? As for the Chiari, in May of 2013 I had emergency posterior fossa decompression, here the surgeon created more space for the cerebellum as this relieves pressure on the spinal cord. At this time the surgeon also made an incision on the back of the head and down the neck area, and removed a small portion of the bone at the bottom of the skull, this is called, craniotomy.

In November 2017, for the Syringomyelia, I had spinal laminectomy in which they placed a syrinx shunt – this shunt (a flexible, tube like device, according to my surgeon it’s also less than the size of a hair strand in diameter) will remain in my body forever. The syrinx shunt diverts the fluid from the syrinx into another space in the body where it can be absorbed. There are a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space, also known as the abdomen. The space location is determined on the patients case and the surgeons personal preference.

Why spread awareness for Chiari Malformation? Without awareness there is no funding, without funding, there is no research, without research, there is no cure, without a cure, there is no hope. However, if not in my lifetime, maybe another’s, but I pray that there will be a cure for Chiari – someday.

Today, I’m still living with a number of ongoing symptoms such as difficulty swallowing, headaches, vertigo, imbalance, difficulty concentrating, etc. which also includes chronic pain. I need to be monitored for changes that can occur in the CSF flow or cerebrospinal fluid. I’m currently experiencing severe numbness on my left side, especially in my face and tongue – you’d never know it if you’d see me. However, I finally have a great neurological team that is helping by monitoring me, via MRI’s and managing my pain levels, via medication, as best as they can. It’ll always be a process, but it’s a process that with patience, it’s as tolerable as it can be.

The perfect cure for worry, is to trust in God. 

And in light of my series ‘Happy Meme Monday’ I’ve decided to include some Chiari Malformation memes. Enjoy.

These memes – sum it all up. Have a blessed Labor Day.

A-

Visit my online store for Chiari Malformation awareness merchandise.